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I am 47 and going to turn 48 in a month. On 12/31 I had a lumpectomy for stage zero breast cancer. Since I’m under 50 they did genetic testing and found it positive for Lynch syndrome. Looking at the family it now makes sense since both my aunts had endometrial cancer and one also had ovarian cancer.
Lynch syndrome gives me a 50% of endometrial cancer and a 13% chance of ovarian cancer. Normal chance of ovarian cancer is less than 1%. Also high risks of colon cancer and other cancers. They referred me to a bunch of specialists to get everything checked out. Since I’m almost 48 and done having kids they recommend a hysterectomy and oophorectomy. It is up to me ultimately if I want to have both ovaries removed or wait until 50. My aunt had both cancers in her late 40s, however. There is no good test for ovarian cancer. I can’t take estrogen because my breast cancer was estrogen positive. Both choices seem like bad options. On one side I can have everything removed, go into surgical menopause and have a higher risk of heart problems, osteoporosis and dementia. On the other side I could get ovarian cancer like my aunt and have to have everything that goes along with chemotherapy. Any experience with any part of this? |
| You are old enough that you’d go through menopause soon anyway. |
| It's going to be a big change, but as the PP said, you can't avoid it anyway. Talk to your PCP about your concerns. |
This. My mom had a hysterectomy around that age and some HRT. She's mid-80s now. It doesn't seem to have affected her life. My grandma-in-law had ovarian cancer. Definitely do not want to have that and go through chemo. Seems like a less severe/disfiguring decision than the BRCA radical mastectomy people have to make. I think hysterectomies got pretty common, like c-sections. There should be a lot of research on that to review. |
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I'm really sorry to hear about your diagnosis. My DH has Lynch Syndrome so he's seen the women in his family deal with these questions. He recommends reaching out to the support groups for help navigating these concerns given that Lynch poses some extra challenges for women in your situation. I don't know how to do direct messages on here, but feel free to contact me if you know how, and we will happily share links/contact numbers.
This is one of the groups he suggests: https://www.aliveandkickn.org/ |
I agree with this. You are likely on the brink of natural menopause anyway. I went through surgical menopause at age 31. 20 years later I still don’t regret it despite the concerns you raised. |
| Menopause will suck but it’s something you have to go through once. And when your friends are deep in it, you’ll be done! |
Let’s not go down the road of the suffering Olympics to see who has it worse. There’s a whole forum dedicated to side affects related to menopause so it does feel like a big deal. Even your mom took hormones to help. Sorry to hear about your grandma in law. |
Thank you so much. That group looks great. I will pass it onto my other family members who got diagnosed this year as well. |
Thank you, it’s good to hear that. |
| I have late stage ovarian cancer and my treatment is chemo and having my uterus, cervix, tubes and ovaries removed, in addition to having tumors throughout my abdomen surgically removed. Part of my small intestines will have to be removed to reach one ovary. If I had to have a complete hysterectomy either way, I’d sure rather skip the cancer and chemo part. If I were you, I’d do it prophylactically to have peace of mind. Osteoporosis and dementia are problems you only suffer if you are blessed with years of life after the hysterectomy. |
| I am sorry for your diagnosis. I was in the exact same boat 10 years ago and opted for surgery. Cancer free still, and I have no regrets. Everyone is different when it comes to the menopausal symptoms. But know they will eventually diminish. Take good care of yourself. |
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I went through surgical menopause (oophrectomy) at 44 after breast cancer.
I actually did not have a hard time with the sudden menopause (e.g., no hot flashes, just painful feet when walking for a bit). I don't know if I was just lucky but I wish you the same easy outcome if you decide that going that route is best. It was optional for me and I decided to do it because I had a toddler (who's now in college and I get to take her calls about various "crises," which I am glad to be here for) and I wanted to increase my odds to see her college graduation. Fingers crossed for us both. |
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I have Lynch syndrome as well. I only found this out when I had both ovarian and endometrial cancers at age 44. I guess for me, going cold turkey on estrogen paled in comparison to chemo, radiation and the terror of possibly leaving my 7-year-old DD motherless.
Still, I did have significant hot flashes for years and that was not fun. There are now non-hormonal prescription medications, though. Anyhow, I think the best thing to do is get everything taken out, especially with your family history. I had no relatives with these cancers. Best of luck to you. There are several Facebook groups for Lynch support and your question is discussed frequently. |